Solly and SDR

Screenshot 2019-02-10 at 8.34.32 PMIn two weeks from today, Solly and I will be in St. Louis to consult with world-renowned neurosurgeon Dr. T. S. Park to determine if Solly is a candidate for a procedure called Selective Dorsal Rhizotomy (SDR). This is a potentially life-changing surgery and while it is one that I’m not confident that Solly is a candidate for, there’s a part of me deep down inside that has all fingers and toes crossed that we’ll get a “yes” from Dr. Park and will be able to schedule surgery for the first half of this year.

What Is SDR?

If you’re interested in a medical explanation of SDR, I highly suggest heading over to the St. Louis Children’s Hospital’s SDR page. If you want the Camie explanation, read on. In short, it’s an invasive surgery where a surgeon cuts through the spinal nerves located in the lower back that cause spasticity. Spasticity, or muscle tightness, is a common side effects of cerebral palsy and it’s one of the main reasons that Solly struggles with things like four-point crawling, ground transitions, and walking. SDR would almost permanently eliminate spasticity. (If you’ve been following our journey for awhile, you might remember that we had a much less invasive procedure called SPML done back in 2017. The results would be similar, but permanent – the spasticity would not return.) Continue reading

The Last Six Weeks

I find it’s always hard to come back to the blog after taking a bit of a break: where do I pick up? Do I skip everything we’ve done since our last post or do I go back and cover every single little thing?

I’ve decided this time around to do a quick recap of the end of the year as we did some noteworthy things that I want to mention.

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Enjoying Nashville in the late Fall

In short, the last six weeks were a blur. Here’s what we did: Continue reading

SPML: One Year Later

It’s a celebration

This week marked our one year anniversary of Solly’s selective percutaneous myofascial lengthening (SPML) surgery with Dr. Nuzzo in Summit, New Jersey. Our decision to move forward with this surgery was a pivotal point in Solly’s journey towards independent movement. In the weeks leading up to this anniversary, I’ve been reminiscing on the past year and celebrating all of the gains Solly has had and changes he’s gone through because of this surgery.

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Solly just moments before SPML

One year ago, my stomach was in knots during this optional surgery to help Sol’s spasticity (muscle tightness). I felt like I was the worst Mom ever for choosing to put my son under general anesthesia for a procedure that would be painful for him, at least initially. But as Dr. Nuzzo pointed out when we exchanged emails in a virtual consultation, Solly was living in “paralytic jail”. He wanted to move so badly, but his body fought every impulse to move. If we did nothing, it was inevitable that Sol would never be able to move on his own and his independence would be extremely limited. Because of his spasticity (muscle tightness), his bones would deform and he’d likely have to have a series of painful, invasive surgeries to secure his leg joints. Spasticity doesn’t go away on its own: medical intervention is the only way to help manage it. I’d spoken with parents whose children had SPML and after the surgery, their only complaint was that they hadn’t done it sooner. I knew I had to push past my fears and move forward with the surgery. Continue reading